All Grown Up and Still At Home
Published May 16, 2009 @ 12:24AM PT
Yesterday I wrote about 42-year-old Noah Greenfeld, whose brother, journalist Karl Taro Greenfeld has written a memoir, Boy Alone: A Brother's Memoir. And yesterday was also my son Charlie's twelfth birthday meaning that he's got one more year before he hits the 'tweens. Except that, he is an adult size-wise.
Yeah, I've brought this up a lot. One reason is because my son experienced a jaw-dropping growth spurt this year----6 inches in about 6 months. Second is that I'm 5 feet tall and that ain't gonna change (it's more like I'll end up shorter as the years pass). Jim still has a couple of inches on Charlie but, if Charlie keeps growing at the same rate---well, he won't have to jump too far to reach a basketball hoop.
So reading about how parents struggle to seek help caring for adult children in yesterday's ABC News, I felt like, um, I think I'm already there, from a physical perspective. The ABC News story is one of those grim-this-is-the-reality reports. It starts with recounting the "alleged murder" of 65-year-old Kay Barragan: She was found dead at the bottom of a staircase in her Long Island home on Wednesday; her 38-year-old son, Eduardo Barragan, has been charged with second-degree murder. Barragan had been separated for a few years from her husband, Napolean Barragan; their son, who is reported to have schizophrenia, had lived with her for his whole life.
ABC News also brings up the story of Trudy Steuernagel and Sky Walker: Walker was charged with killing his mother earlier this year. Indeed, there's been more than a few accounts of individuals with disabilities and acts of violence and against family members or those living with them.
Regarding this admittedly grim topic, I'm trying to walk a line between catastrophic thinking (and cries of "we have to get rid of dread disorders like autism because look at what awfulness can happen") and sober, realistic, and honest understanding of the situation and what is involved. Some quotes from the ABC News express what I've been thinking about:
[Clinical psychiatrist Roya] Ostovar, who's also director for the Center for Neurodevelopmental Services at Harvard's McLean Hospital, said it's not unusual for parents with disabled children to resist getting help, even when they realize their own safety may be at risk.
"Parents fear that nobody will take as good care of their child as they would," Ostavar said. "When you're in the midst of all of this, it's very hard to step back and reassess the situation and figure out that it's time to ask for help.
"The thought of handing over your child to someone else -- a stranger -- places a tremendous amount of guilt on the parent."
Ostavar said that outsiders often incorrectly assume that all parents who feel unsafe living with their adult, disabled children have no reservations about placing them in assisted-living facilities.
"It's not an easy decision," she said. "It's heart-wrenching."
Another common misperception is that as children get older they become easier to handle, even with their disabilities. But age, Ostavar said, often has no bearing on how easy a child is to control.
"Even with a typically growing child, you might think that a 2-year-old is more difficult than a teenager, but we all know that's not true," she said. "The needs of the child just change and it's the same when you have an adult child who cannot take care of themselves.
"For those children with good cognitive skills, there is a great awareness about their own disability and a sense of grief about what they cannot do as they get older," she said. "It creates a very difficult dynamic and a kind of complication, and so it's not necessarily simpler because the child is older."
Also:
Lori Warner, a licensed psychologist and director of the Hands-On Parent Education program at Beaumont Hospitals in Michigan, said that a child's size, as they grow older, is another obstacle parents must overcome.
"If your 4- or 5-year-old child weights 30 or 40 pounds and is having tantrums, you can do a lot to physically restrain them," Warner said. "But an adult who is much bigger will be a lot harder to deal with."
Warner said that as children age, managing their outbursts becomes increasingly complicated. "Parents begin to find that they're physically incapable of physically handling and emotionally handling their children," she said.
This has already happened for us. Like I said, my son is an adult in the size and strength department, and Jim and I have really had to rise to the occasion. Sometimes I wonder why in the world he had to get so big so fast but then I also think, well, good that he's relatively young though so tall, as this means we can start trying to teach him how to communicate and control anxiety and worries and panic, rather than acting out on it. And I know I've said this over and over, but we make getting Charlie to exercise and be physically active as premium items on our list of things to do every day.
The other issue that Ostavar mentions---of whether it's easier, or not, to take care of children with disabilities as they grow older---is one whose answer is in flux for me. Sure, it was simpler taking care of a much smaller Charlie who I could swoop up in my arms (and I carried him until I just couldn't anymore). Even as Charlie's gotten (way) taller, he's also understood a lot more and been better able to understand what is being asked of him.
So big questions, none of which I'm going to solve today, remain.
Sometimes, Warner said, the hardest part for parents is recognizing that they're putting their own safety at risk by continuing to care for their children. "It's something people don't want to believe," she said.
"It goes against your gut instincts and feelings that your child would ever harm you on purpose."
Sure it is. And I don't think my son is at all aware of how strong he is, and of how much force he has in his body. Up to us to do the right thing now and teach him how best to be and comport himself, in the full knowledge that maybe there's only so much we can do.
And Jim and I have already started in a whole new set of challenges---like I've said before, life raising Charlie is a journey and, though we're often weary, our stamina is better than it used to be.
All those bike rides, walks, and ocean swims with Charlie---they add up.
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Comments (12)
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Author
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
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End the Perpetuation of Pity
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End the Perpetuation of Pity
"It goes against your gut instincts and feelings that your child would ever harm you on purpose."
At times I think that it's even more sad to think that there is no purpose involved. We had a very sad case in our town a few years ago where a man that I went to high school with killed his mother (he was in his 40s, she was in her 70s)...she'd spent his entire life "doing everything right" , looking after him, and trying to get help for his schizophrenia. One day his visions took over and he killed her, and was horrified beyond belief when he'd recovered enough to understand what he'd done. My son definitely doesn't "try" to hurt people, but he does.
But even more than dealing with the heartbreak of potentially violent actions, there are too many elderly parents who are still looking after their disabled adult children long past the time when they have the physical ability to deal with it. How our various governments expect an 80 year old woman to do lifts and transfers for her 60 year old child in a wheelchair is beyond me, and that's a daily reality for many families.
Even when parents are willing and able to ask for the help that they need, too many times it's just not available. We need to get working very hard, and very quickly, on the best ways to support all adults as well as pouring money into early intervention and treatments for children.
Posted by Jen Niebler on 05/16/2009 @ 04:21AM PT
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I'm just really amazed that we found Charlie's teacher and her staff, who she's trained to help him through his tantrums. I realize that, without them, he wouldn't be able to be in the public school where he is. I guess it's a pretty thin line we walk and sometimes it feels we're teetering into disaster. What would happen if as much money could be "poured" into needs of older children and adults as early intervention?
Posted by Kristina Chew on 05/16/2009 @ 09:58AM PT
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What I found sadder was a blog post in the Hub during the week (sorry, My FIL passed away on Mother's Day and it was gone again before I'd saved the link to it) and it was about how a "Scotsman that was violent wasn't a Scotsman and therefore someone who was violent and autistic wasn't an autistic......"
This stuff happens... regularly. As that article says... it's protected within the home.... none of us wants to admit such things could occur. Due to a lot of hard work, and a lot of language and maturity growth my 9yr old is in a regular classroom and can handle his emotions the majority of the time. I'm truly shocked, there were days for years I thought by now he'd be in a Behavioural class.... Behaviour is part of the diagnosis... to ignore that it happens helps no one.
I'm still mad about the lack of social skills training for those with Autism in our area.... and madder that the woman that would do it... can't get parents to admit it needs to be done so it's done locally... and paid for. It's on my lobby "to do" list... but for now I just do it at home.
I appreciate that those who can live independantly with minimal supports are lobbying hard to get those supports so they can live independantly. But the other end exists and group homes and institutions with their 24 hour care and strict routines are necessary as well. Maybe those who are speaking for all autistics should lobby that these services exist with qualified staff, and extra services. So, there is a place for my son when he's an adult.... b/c here, they've been closed and it's a 10yr wait for a group home and it could be anywhere across the Province.
S.
Posted by Fw2 farmwifetwo on 05/16/2009 @ 06:18AM PT
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I would like to see the press and public outrage give at least as much time and attention toward violence perpertrated *against* PWD as it does violence by.
Posted by Dora Raymaker on 05/16/2009 @ 10:42AM PT
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Yes---more time and attention, preferably.
Posted by Kristina Chew on 05/16/2009 @ 10:57AM PT
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"For peace of mind, we need to resign as general manager of the universe."
- Larry Eisenberg
"Each condition I flee from pursues me.
Each condition I welcome transforms me
And becomes itself transformed..." Sam Hamill
"Life's up and downs provide windows of opportunity to determine your values and goals - Think of using all obstacles as stepping stones to build the life you want" Marsha Sinetar quotes
Here are inspirational quotes I found on reading your interesting blog, Kristina. Thanks for sharing your feelings. My wish is that you find answers and peace. It isn't an easy journey but it is good that you are asking these questions. It is hard to be a parent especially of an adolescent.
The thing about autism being complex it forces us to live in the present. Cancer(complex) is about living one day at a time in a situation that can't be controlled. I am thankful at the end of the day that I survived today and gave my kid love. We(my son and I) have a connection because of the love I give and he gives in his own way. You have a strong connection with Charlie (from your blog writings). That is all I can count on or control- the moment of time I am in.
No one can plan out or provide for all our children's future needs. I taught my brother to live away from home for 7 years. But he needed to stop living on his own-too much stress. My parents always said they would take care of my brother but they couldn't when he was in high school. Now my mom is responsible for my brother. Who knows what the future will be.
"Que sera sera (song)
Whatever will be will be
The future's not ours to see
Que sera sera"
We can't plan for a future whose possible scenarios may not even happen. I certainly didn't know I was going to have a future autistic child who growing up put me in precarious situations. When I got married I thought about possible scenarios that never happened.
I thought why make yourself miserable over something that may not happen? I was able to trust in myself in the present and future because I had dealt somehow successfully with difficult situations with my son and brother from the past. I thought success in the past means not undermining myself by being afraid of the future (dreading or thinking too much about the present and future). Don't carry emotional baggage I thought with you because the lifelong journey is already difficult without adding on unnecessary difficulty. This was survival advice from my respite families.
In other words you have to cross the terrifying waterfall to save your life. You do it without thinking or you won't survive. Thinking about your fear of falling will undermine your attempt to save your life.
Don't let the past steal your present. ~Cherralea Morgen. Your son has some beautiful gifts and his strengths. Enjoy in the present what Charlie has to offer you. You will need those memories for the future when dealing with difficult future situations. What got me through difficult adult future situations was to remember the memories and to keep my love strong for my brother.When my brother had difficult moments he could feel the love I had for him because I would play those memories in my mind. It's normal for parents to feel adolescence is difficult. Our children can change themselves. They are part of the solution too. The responsibility isn't all on us.
I was afraid of the physical strength with my family member and during respite care. You have to watch the non-verbal communication. Non-verbal children interact mostly with us in a non-verbal way. They pick-up on how you feel about them and react to those feelings. Behavior escalates when they don't feel trust and love. In respite care I have seen autistic kids upset because they can sense how their parent feels about them.
"What we fear comes to pass more speedily than what we hope."
---- Publilius Syrus - Moral Sayings (1st C B.C.)
Posted by L I on 05/16/2009 @ 02:04PM PT
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This may seem a bit off-topic but regarding your last point about understanding non-verbal communication really hit home. I've tried so much to understand Charlie's and become so much more aware of mine (maybe that is why I've become a better teacher---I pick up on the emotional register of my classes very closely now).
"Terrifying waterfall" is a very good way to put it-----indeed, I didn't know how to swim till I had to chase after Charlie in a swimming pool. Now I can do lap after lap.
Posted by Kristina Chew on 05/16/2009 @ 10:21PM PT
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@Kristina. Well even though I had to go quickly after my son in the pool fully clothe on different occasions I still can't swim even if my life depended on it. I really don't know how I did it. So I am amazed you learned to do "lap after lap" in order to help Charlie. That is quite an accomplishment. Signed Terrified of Water.
Posted by L I on 05/19/2009 @ 10:56PM PT
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I've been grateful for Charlie for getting the pool! Love swimming now, and that's quite a turnaround from my old self.
Posted by Kristina Chew on 05/20/2009 @ 05:30AM PT
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Like my ABA school director says: "these kids grow up having people physically move them to go places they don't want to go, and stop them from doing things without explaining why. Should we really be surprised that when they get strong enough, and they havent been given the alternative means of communicating, they act out physically too?"
My son was in a state autism unit where the only behavioural management that was consistently implemented was shadowing and restraint. And individuals who used force to demonstrate their needs would quickly find that it worked.
My own son was placed in a busy playground each day with limited supervision while the classroom staff took their breaks.
He couldnt cope so pushed another child away, and when forced by the staff to hug the child to "say sorry" - he bit him. Then they let my son go back inside where it was quiet. Over the next 5 days he bit 6 other children. And the staff just kept repeating the pattern, effectively teaching him to do it.
In his new school the staff take breaks 1 by 1 while the children do structured group activities in a small work room. And when my son finds the noise or interference of another child invasive, he uses a "please be quiet" card to express his distress. And then he takes a break in the quiet room away from the noise.
He is 11 now and he got to the new school at age 10 and about 5 inches shorter than he is now. If we hadn't come up on the list for this school, I can't imagine what the old school would be doing with his increased strength and will.
Well I can, I would've have taken him out of school.
The "old school" model is used up and down the country to teach small autistic children until they are 18. Our "new school" is one of 13, struggling to survive. But completely transforming the quality of life for the families of the children and young adults who attend.
They are literally preventing tragedy every day.
xx
Posted by lisadom dom on 05/16/2009 @ 02:23PM PT
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Yes, they are----you are so right. We overdo physical prompts and touch and contact with kids so why should, indeed, we be so surprised that they do, too?
Charlie used a "break" card for awhile when it became, for instance, too loud in his classroom. But gradually this started to become less effective, in part because Charlie was effectively having to leave the room whenever another child was crying---it was as if Charlie was being penalized, having to stop his work or whatever he was doing, due to another child. Thanks to his now wearing headphones, he's been able to stay in the room with the noise ---- and he sure likes his music lately.
Posted by Kristina Chew on 05/16/2009 @ 10:25PM PT
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@lisadom dom. Thanks for sharing your story. Glad your child is in a school that "literally preventing tragedy every day". I always say, Make one little change, change a child and a whole family. Your story is inspirational. There are successes out there.
Posted by L I on 05/16/2009 @ 02:44PM PT
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